“Our study demonstrates the high sensitivity of [gallium Ga-68 dotatate] in the localization of [ectopic Cushing’s syndrome], for both occult primary tumors and metastatic lesions,” the researchers wrote. “Importantly, the use of [gallium Ga-68 dotatate] impacted clinical management in 64% of patients with [ectopic Cushing’s syndrome] overall.” The researche […]

The 11th annual Pituitary Day will take place on October 19, 2019 Patients living with pituitary disorders can hear lectures from our pituitary specialists, see movies of pituitary surgeries and hear from other patients about their experience living with pituitary disease and undergoing surgery.

Cynthia is from Ruckersville, VA. She is testing for Cushing's due to many symptoms. tested for CD because after exhaustive research on AVN (Avascular Necrosis) related to other diseases. I have four known areas of AVN & after seeing the symptoms of CD, I realized may have this. I also have numerous other diseases Lupus, Sojgrens, Hypothyroid, High […]

Today is the Thirteenth Anniversary of my kidney cancer surgery. These thirteen years have been bonus years for me. For my cancer stage, the 5-year survival rate was 81% and I’ve made it more than twice that long – so far.

Kathy was diagnosed with a pituitary tumor in 1991. At the time the only symptom she was aware of was a severe headache. She had a transsphenoidal resection followed by radiation therapy for 23 days. They said they could not remove all of the tumor.

Sadly, we lost another Cushing’s patient on Friday, May 9, 2014. Melinda was a member of the Cushing’s Help message boards since Jun 24, 2007. She was only 25 and left behind a young son and many loving family members.

He died of a presumed heart attack. September 19, 2015 he said "'I was diagnosed hypertensive way back when I was 20. The condition remained for years, and became more acute with my cushings pit tumor. I still have high blood pressure, partially teated with three meds. I'll have to consult my doc and see if this may also be an issue."

'My name is Caroline and I dont post often but have met a few of you guys and read the board regularly, it has definitely been a godsend to cushies everywhere. The reason I am writing tonight is I have just received devastating information about a dear friend of mine, and a woman some of you may have met during testing. Her name is Kathryn Miller and sh […]

Okay, I’m probably ready to get politically incorrect here. Oh well.
It seems that at least once a day, sometimes many times a day,I see a post on Facebook that in its short version says a cancer patient has just one wish, that is to live. Repost…….

I have no doubt that is true. I have known several cancer patients & it is a real struggle and sometimes the outcome isn’t good (understatement).

Now here is the *but* & my own little personal rant.

A Cushing’s patient has many wishes.
1. Finding a doctor that believes they can actually be sick, not just fat & depressed (which happen to be symptoms).
2. Having friends & family that thought they were truly sick not just lazy.
3. Having enough energy to make it through the day and not being totally exhausted whether they did or didn’t accomplish something that day.
4.Being able to find an understanding doctor that isn’t halfway across (or clear across) the country. The same can be said of finding surgeons.
5. Wanting their mind to be clear enough that they can keep up with their job & their peers.
6. Wishing their body was physically able to do just some of the simple tasks set before it.
7. Wishing that they didn’t feel like they could throw up most of the day.
8. Praying they can get a nights sleep so they can make it through work the next day. And that they didn’t have so much muscle & bone pain.
9. Wanting their mood swings to go away so they can keep up with their emotions.
10. Praying (literally) that they live long enough to get a diagnosis.

This list could go on & on. The really sad part is that there were times I wished my family had cancer. Getting a dx would of (usually) been so much easier. Cancer doesn’t usually affect every system in the body. If you get a cure from cancer you aren’t usually left with permanent damage to random body systems.

Statistics say that Cushing’s is rare. I know it’s not. As the Cushie community says – it’s just rarely diagnosed. Most people think they don’t know anyone with Cushing’s. Most people would be wrong. They just don’t know a diagnosed Cushing’s patient.

That overweight woman in front of you in the checkout line? The one that has terrible mood swings? She might have Cushing’s. The coworker that suddenly can barely do her job because she is so exhausted and has terrible brain fog? She might also have Cushing’s. You know that girl at school that now has arms so hairy it looks like fur? You know, the one that also smells funky sometimes? Yeah, she probably has Cushing’s. You laugh at her but you know what? This disease doesn’t discriminate. It might be you someday wondering why the weight keeps piling on when you barely have an appetite and work out every day.
As with the list of *wishes* I could go on & on because Cushing’s truly is the disease that keeps on giving & giving & giving. Even after a cure (relative term) it still keeps on giving.

As a wonderful neurosurgeon has said “Cushing’s kills.” It just does it at a very slow, painful pace.

MaryO’Note:

This is fantastic, Judy. Thanks for saying it!

I’ve often seen that stupid FB post and haven’t reposted it.

I am both a Cushing’s and a cancer survivor. For me, the cancer was easier to deal with.

I have been dealing with Cushing’s and the after-effects since the early 1980’s.

All I’m left with after my cancer is a scar and some bad memories.

I think Sarah’s death got lots of us thinking. We’ve seen so many unnecessary Cushing’s deaths and it just breaks my heart.

Judy, may I use this as a guest post on my Cushing’s and Cancer blog? It’s perfect!